April 4, 2016

Dear Susannah,

As you know, I am one of the advocates who supports keeping RHCs open. One of that "small, powerful group" that you blame for this travesty.

You raise the question about why the state would spend $97,000,000 in the next 10 years. Would you question the costs of sustaining the University of Washington, or any of the state's Universities which are also institutions? I suspect you would simply accept that the costs were justifiable because of the service provided. Most people would. Or do you think we should hire private tutors for all the students? Maybe the legislature could privatize the universities, establish a system of contractors to run small, home-based learning centers? Pay the professors less or even have one supervise many poorly paid grad students. Just forget about sustaining those expensive campuses with all their old buildings. This may sound silly to you, but to me, it is no sillier than suggesting closure of all the RHCs in favor of subsidized businesses that run residential services for people with IDD. The most important thing is to recognize the purpose and value of the institutions in question. Especially in the case of the RHCs, we need to recognize that their residents are real people, many very fragile, emotionally and psychologically as well as physically. They can be harmed by callous determinations. They are not pawns to be moved about in order to satisfy somebody's ideological values or somebody else's economic opinions. In fact, the law dis-allows both of those reasons. Yet, together, those two reasons seem to form the basis for your series.

If DSHS would allow admission to RHCs of people who choose them, honor their American Disabilities Act Supreme Court Olmstead Decision-ensured right to choose them, the cost, per capita, would be reduced. Your series is, quite simply, in support of an industry of vendors. But it isn't even free enterprise you are championing. The state determines the rate, chooses the vendors and pays them. The competition that encourages excellence in free enterprise is lacking. The oversight that would ensure even decency and safety is also lacking. Steve O'Ban's bill that was signed into law today, that requires the state to check on some people is a start; but serious amendments will be needed before the level of protective oversight that is needed ever becomes law.

Susannah: You say in your ending comments that it is hard for people whose family members have been in RHCs for years to consider change. Your statement discounts most of our families, whose loved ones are in RHCs, today, because they were already failed by the community-at large. Most RHC families have sacrificed and struggled valiantly to keep our loved ones at home. When that failed, we tried community-at-large venues, often, several. When those failures finally forced us to face the fact that we had to use the services of an RHC, we suffered terrible guilt and remorse. But then, we discovered that our loved ones were getting what they needed, FINALLY.

Once they see their loved ones' gains in RHC care, many try to exercise their loved one's Olmstead-ensured right to choose an RHC over a community-at-large venue, but few have the financial resources to bring the federal case to court. Knowing that, DSHS continues to press it's policy of "diverting" them to community-at-large venues, requiring vulnerable people with idd to be failed several times by the community-at-large before allowing them into an RHC. Why don't those people's experience count for you? Why do you discount it?

The community-at-large successes that you showcased were exemplary. Somehow, you failed either to find or to showcase the ones that sit idle, day after dreary day, in their lonely, isolated, community-at-large homes.

Susannah, over and over again, in this series, you have taken potshots at the unions. The unions are responsible for high continuity of care due to low caregiver turnover in the RHCs. As a family guardian of a non-verbal, totally dependent person, I am immensely grateful for that. In part, my sister thrives because of the relationships she has formed through years of knowing and having her every nuance known by the same caregivers. Here is something that happens as a result of decent-enough pay: those long term workers are not just in it for the money; I know from years of experience with them that their ability to stay on the job that is afforded by unionization also affords them the ability to work with heart and dedication for each, unique person in their care.

Of course, there are families who can afford to subsidize higher caregiver wages and benefit packages for their loved-ones living in the community-at-large, but most cannot. So their loved ones must suffer the constant turnover of workers, stranger after stranger after stranger assigned to take care of them before moving on to a higher paying job, maybe one with benefits. For the person with idd, the situation is fraught with risk.

Thank you, Susannah, for having offered to create a story to feature our comments. I hope you have many such as mine to use together. I look forward to seeing the story. If you do it as a video, if you could please pay us the courtesy of avoiding your practice of using the least flattering visuals you can create of find of the facilities, I and other families and guardians would appreciate it.

Sincerely,

Saskia

April 11, 2016

Hello, Susannah,

This is a new comment for publication in your story on comments.

About half of the homes at Fircrest School are in it's campus-based Nursing Facility. In their closing remarks, Feb. 4, this year, Federal Standards Auditors referred Fircrest's Nursing Facility as "the cadillac of nursing homes." This year, Nursing Facility auditors could find only one small area to cite for improvement.

The other homes are in the Intermediate Care Facility. Last year, new auditing standards were the cause of citations that resulted in admissions holds being elected by Washington's 3 state-operated Intermediate Care Facilities' administrations. Given a choice between risking decertification by being re-audited in 90 days or taking more time to develop programs that they could be sure would meet the new standards, all of the RHCs chose the latter option, even though it meant that admissions would be frozen for the length of the time until re-audit was requested by each facility. Fircrest School is now ready with it's newly developed programs for the reaudit. The auditors do not announce when they will arrive, but they are expected to return soon.

From the point of view of parents and guardians of RHC residents, the fact that, historically and currently, the Federal auditing standards are frequently raised is a good thing. It means that "institutional" care and quality of care keeps getting better and better. Because of the audits, we sleep better at night. We worry that there continue to be fewer audits and by lower standards in the community-at-large residences that are operated by state supported businesses. Residents of those facilities deserve the same protections as those afforded RHC residents.

Thanks very much, Susannah. I am looking forward to your story featuring our comments.

Sincerely,

Saskia Davis, RN, Family Guardian